This is the story of our precious daughter, Sara Rose. She was born at 27 weeks. This details our journey as a family through the ups and downs of this situation. She is our 3rd daughter, she has hydrocephalus and now lives with a shunt. She is home now and her older sisters adore her. Here we are, living and depending on the strength and grace of our Father in Heaven.

Tuesday, January 5, 2010

Happy New Year!!

What a great and difficult Christmas season we had. Lot’s of good times and memories made with family and friends, too much good food eaten, too many pounds put on, but it was one of my favorite Christmas'. On the difficult side, over the last 2-3 weeks we have learned Sara is allergic to rice cereal and has reflux. Twice Jennifer has gotten ready with both of us convinced we were headed back to the hospital with Sara. Jennifer remembers one of the NICU nurses telling us – with Sara it is always going to be something. Boy was that an understated prophecy.

I posted the video below of Sara eating rice cereal. You know rice cereal, the substance so bland, so safe, so easy that any child can learn to eat with it with no problems. A substance so safe we fed it to her 4 straight days. I commented on the video that it was clogging her up – ok understatement of the year. Only for the next 3 weeks would it cause poop problems. By the end of the first week of cereal (this would be the weekend before Christmas), she was incredibly fussy, straining to pass a stool, and was not eating as much. It sounds like it all happened at once, but it was a gradual process that only happened at certain times of the day. By that Friday night (Dec 18) we were convinced she was getting distended and off to the hospital we go.

We woke up that Saturday morning and called our pediatrician who is kind enough to let us have his cell number. He said give her a suppository and call him back in an hour. If it doesn’t help, bring her to the ER for an x-ray. So I’m rocking her and pleading with God to be merciful to Sara, our other girls and our family one week before Christmas while Jennifer gets ready. Jennifer comes in the room to get her clothes and car seat ready, I stand up with her out of the rocking chair and all of a sudden she poops everywhere. I’ve never been so happy to smell it or clean it as I was then.

The doc said just watch her, increase the amount of Miralax we were giving her (all natural stool softener that is awesome, and apparently they can’t get too much), and see what she does. So through the rest of the day she was better. That evening she is hurting again, in pain, straining, fussy, not eating. Here we go. Jennifer is at the church with Abigail and Emma Grace rehearsing for the children’s Christmas play and having a Christmas party while I’m walking around the house with Sara praying about should we take her to ER or not. We both decided that when Jennifer comes home, she’ll take her and I’ll get the girls in bed. While I’m walking around a thought pops in my head – give her a warm bath. I’m sure I’ve heard this advice before, but I’ll chalk the timing up to God. So, I give her a bath, she relaxes and voila! We have more of the golden goop floating in the tub.

This is basically how we lived for the next week and a half through Christmas. Increase Miralax, if it gets bad give her a bath, talk to one of the nurses, and maybe give her a suppository (which we only had to do once more). Slowly she continued to improve and right around New Year’s Eve – New Year’s Day we feel like that was resolved. Talking to the doc and nurse, we all feel it was an allergy to the rice cereal. So, the game plan is to skip cereals and begins fruits and veggies later on moving very, very, very, did I mention very? Very slowly.

Enter situation #2. Just as the poop issue was resolving, she threw up on Tuesday night (29th). Jennifer had just fed her, laid her down to change her and a fountain of vomit came forth from Sara. Now we’re thinking distention or is it the shunt (both things happened the last time she vomited). She’s fussy, but she sleeps good. We head home the next day from the outlaws, err I mean in-laws, and she throws up on way home. Jennifer calls doc, they give advice to watch her. We do and over the next few days she throws up every now and then.

We think the throw up is kind of phlemy or snotty. All of us have been around and had a little bit of that over the last month or so. Not colds, just snotty (in this part of the country they call it The Crud – don’t ask why, I don’t know). But it hasn’t affected Sara. God has helped us to be very diligent with Purrell, changing clothes and limiting who deals with Sara to basically me and Jennifer. We don’t really even let our girls touch her much right now. But by New Years day we think she is getting congested and snotty in her throat. Coughing a bit, though dry. We set up the cool mist humidifier in her room., get out the Vicks and start praying. She is sleeping some in her bed, but at night she is having to be held by one of us and rocked part of the night. But then every few days she has a good night. I think that is God’s mercy extended to us.

By this past Sunday night it seems to us like she is trying to cough but can’t. Maybe her lungs aren’t strong enough. We both pray but are convinced we are hospital bound. Jennifer actually takes Sara to the doctor yesterday. My parents are on hold in case they need to come and stay with our girls for me to go to hospital. I sit and wait for Jennifer to call. Tick-tock, tick-tock, tick-tock. Almost an hour passes before she calls on the way home- it’s reflux. Never thought I would be excited about reflux. No hospital, just Prevacid. That’s ok, we’ve been through that with Abigail and a little bit with Emma Grace. We know reflux, we can deal with reflux. And of course, that explains a lot of her behavior, especially over the last week.

So we are still home, Sara had a much better night last night, settled down around 12:30. With the Prevacid we should see some major improvement very soon. The doc was a little concerned about some things he is seeing with her shunt, but he said nothing to worry about now, just watch it and notice if what he sees changes. It could just be her body getting used to it and it will always be a little puffy in a few spots. Pray along those lines. She isn’t showing any symptoms of shunt problems.

We thank God that he gave us wisdom and patience over the last few weeks. We thank Him that we made it through Christmas with our families and no sickness. We thank Him that you all continue to love and pray for Sara.

Over the last few days when Sara has felt better she has been a smiling machine. You see that in a few pics Uncle Buck took of her on New Year’s Day at my parent’s house. Well, I come in Sunday night from church and Jennifer has her genuinely laughing. When she feels better and does it again we’ll video it, but my sweet considerate and caring wife was gracious enough to remind me that she got her first smile and her first laugh. Yeah, whatever, who cares.

One funny story and then I got to go. Two days before Christmas we still have to get stockings and small gifts the girls give each other and Jennifer and I. Because we are all buying for each other, we have to have some way of keeping it a secret. Normally, we all go to one store and use coats to cover up things in buggy, etc. But we can’t take Sara to a store. So we could take turns taking 3-4 trips from home to a store. With Christmas traffic – not gonna happen. So we decide to all go and Jennifer and I would take turns going into store with girls, by ourselves, and Sara stays in car. Brilliant! Great plan. Save time, save gas, the efficiency nerd in me is loving it.

So Jennifer is in the store by herself, Sara is getting a little fussy. I’m thinking she’s about to eat, so I look down into the diaper bag for her bottle and formula to get it ready. I’m looking, looking, looking, not finding and then it hits me. We forgot it. I fixed the bottles and had them on kitchen counter. I assumed Jennifer would grab them. She assumed because I fixed them I would grab them. And in all the hustle and bustle we left them. I’ll let you all sort out the blame.

So I text Jenny – did you happen to pack her formula? She later tells me she almost dropped her phone in the aisle in Target when she read that. So, off to the baby aisle, can of premixed formula, one bottle, and one can opener coming up. If there weren’t two other children sitting in our van I would have sworn we’ve never been parents before. How do you leave home and forget food for your baby? I don’t know, but we did it. Breastfeeding was so much easier – food is always packed and prepared and dad gets more sleep at night. Oh well. We got it, Sara ate and our little happy crazy adventure continues.

Is this the life or what?

Playing in snow flurries yesterday. In La you have to celebrate every little bit of snow

Our dog Bella. When we wants to come in she will just sit and stare through the door like this. So your sitting there and look over and see this dog staring at you. Sometimes she will do this through the kitchen window while you are at the sink. Kind of cute and kind of creepy, ha!

3 comments:

Glad to hear that Sara is doing well. I've been following her since her birth and I'm still amazed at her progress! My son also had reflux (his was severe) and was allergic to rice cereal. Who would have thought? He turned out to be allergic to oats and barley, too. You're not alone on that one! Take care.

The best thing for constipation is when she can eat fruits, give her Gerber organic prunes baby food. My daughter was the same way and for some reason the organic prunes do the trick. (The regular ones didn't work)